Mary

I requested mine today. Thank you! I had to go to ER with weakness and it was hard to get the information out to people. This will be beneficial if it happens again in the future to me.

I experience all you state. I couldnt swallow properly before diagnosis. My weight went down to 99lbs. Once i got on Firdapse the feeding tube came out and i can eat all day. I have gained 30lbs.
My voice still comes and goes. The best time to talk is between doses. I use Biotene for dry mouth during the night. Dry mouth is aggrevating. I feel it…[Read more]

Im curious too. I have had back injection pain under anesthesia for several years. I have an appointment with pain clinic. I have had horrible pain in my lower back. I know that there can be lower back and hip pain being i take Firdapst but i think it is beyond that being i had back pain for several years prior. It may have aggrevated it. I need…[Read more]

Thank you so much for the information. I’ll certainly try your suggestions

Im looking forward to Part2. I have to be on that diet and with weak muscles I havent been able to lift a pan until the Firdapse really kicked in. Im getting better but still ordering GF frozen meal very few choises are available. Thank you for sharing!

Going for ride looking at all the trees turning bright yellow, orange and red. It flls my heart full of joy

I walked down the same road. I lost alot of weight not wanting to risk blockage. It got out of control. I ended up with a feeding tube. Im able to swallow better now with treatment. Jumping on this issue right away is really smart.

That does make me nervous. My insurance company pays a huge amount each month for Firdapse. Im afraid that wont last long either.

Yes I did. I only had a sore arm. There wasnt after effect

I received my booster. No side effects. Of coarse arm hurt overnight.

I have gone through everything you just said. It is frustrating. Because you look good for your 15min it doesnt tell it 2 days to prepare for it. It seems that professionals i have gone to seem only what to address basic health issues. If the issue is deeper and more complicated i have to do my own research. He will do what i read but to give me…[Read more]

Yes i will get the booster. Im waiting a little while to hear from other people and their reactions.

It was my fault. I wanted to confirm that my insurance would pay for last month. It took too long. I’ll be on that faster this month

I forgot to mention. I went without Firdapst for 2 days and went back to original symptoms not able to lift my arms and legs being weak and loosing my voice. Have extreme pain.

Thank you so much for sharing your experience. I was down for 2hrs. My whole face went numb Finally got to speak to my doctor.  He was confused or just not listening. Anyone who tried to take my message couldnt identify what I was talking about.  He said I should go back to prior dosage. I’m going back to the 15mg for awhile more. If I find I h…[Read more]

I just bumped up to 20mg Firdapse. The side effect is reasonably scary. Double vision, numb face from nose down to chin. At 15mg it wasnt like this. I’m thinking of going back to 15mg. 15mg worked fine. It got me off the walker in the house and dont have the pain and weakness in my legs and arms. In the long run is 20mg part of the end result to…[Read more]

I couldnt hear. It told me it wasnt avsil as ble anymore. I have an appointment on Thursday this will be intresting to hear. I will play with it and see what i can come up with.
I am on Medicare and Supplement insurance. My doctor told me Medicare only allows for 20 minutes and can only go over 2 medical issues. That was his explaination.

Thank you
I am following what you find out!

Price the only appointment i could get in our area for the Moderna Covid shot was 3 days after my IVIG and steroid infusions are tomorrow and every 2 weeks. Covid shot Wednesday. Appointments for the Covid injection is really hard to get and will be worse when it opens up for everyone.
Do you know of anyone who has had the shot that Close to IVIG?…[Read more]